Under this motto almost 400 participants from 4 continents met from May 8th-11th in Hannover, Germany. Together with a faculty of more than 70 world-leading experts from the fields of neurology, neurosurgery, neuropediatric, neurogenetics, basic sciences and allied health sciences this was, again, the leading international dystonia congress.
The congresses emphasised on novel treatments for all forms of dystonia, including botulinum toxin therapy, deep brain stimulation, various behavioural methods and new emerging strategies to improve or even prevent the development of dystonia. The scientific program was intense and lasted 3.5 days. Nine hands-on-workshops and focused lunch time satellite symposia supplemented the conference and contributed to the vivid exchange of ideas. Young scientists had the opportunity to present their work in the poster session and as free oral communications. Several patient organisations displayed their activities. The congress satellite symposium on dystonia in sports was well perceived. In the industry exhibition the latest technology in botulinum toxin drugs and deep brain stimulation could be discussed directly with their manufacturers.
The highlight of the congress was the Keynote Lecture by Alan B Scott and Eric A Johnson on the ‘Invention of the Botulinum Toxin Therapy’. It was the first time that the ‘fathers of botulinum toxin therapy’ appeared on one stage and shared their personal recollections of the early days of botulinum toxin therapy. A video recording of this unique event will be soon made available through IAB – Interdisciplinary Working Group for Movement Disorders (www.iabnetz.de). In a Special Lecture Professor Dirk Dressler gave an insight into ‘Translational Botulinum Toxin Research’. This lecture was marking the 10th anniversary of the founding of Hannover Medical School’s Movement Disorders Section by Professor Dressler.
‘This congress is now firmly established as the central international platform and meeting point for all who care for people with dystonia’ said Professor Dressler on behalf of his co-organisers Professor Altenmüller and Professor Krauss. ‘We are very pleased to see that there is a strong and growing interest in our congress, despite a more and more difficult environment. The field of dystonia needs to be developed further. We need to attract young people and we need new topics so that the field will be fit for the future. I personally see a lot of potential in Asia, both, in our field in general and for our congress’ said Professor Dressler who is currently setting up a botulinum toxin research centre in Shanghai, China.
Last, but not least, Hannover’s famous springtime and the congress’s social events, including the congress dinner in the private moated Castle Hülsede, generated an atmosphere of openness and exchange contributing to the success of the congress.
‘We were very pleased with the course of this congress. Our studies were well perceived. As co-founder of this congress and of INA I was pleased to see that the congress has now expanded to welcome more than 1500 participants.’ The biannual congress brings together basic scientists, users and manufacturers of botulinum toxin drugs from all over the world. It is the world-wide largest and most important congress on this topic.
Dirk Dressler, MD, PhD
Professor of Neurology
Prof. hon. (Univ. Santiago de Chile)
Movement Disorders Section
Hannover Medical School
Carl-Neuberg-Str. 1
D-30625 Hannover
Germany
t: +49-511-532-3111
f: +49-511-532-8110
dressler.dirk@mh-hannover.de
Professor Dr Dirk Dressler has produced a new publication about dystonia. ‘This publication is focussed on the historical aspects of dystonia. Over many years we have collected historical material on dystonia. It was amazing to see how – over the centuries – physicians and scientist, but also writers and visual artists have dealt with dystonia’, said Professor Dressler. The material was published with the help of Christian Riederer a specialist in publishing of historical material. ‘This publication is the product of a long-term project of IAB – Interdisciplinary Working Group on Movement Disorders. Parts of it were shown as special exhibitions at several international dystonia congresses. Here, we received a lot of valuable input and had many interesting discussions all improving our project,’ said Dressler.
The publication is available free of charge from IAB – Interdisciplinary Working Group on Movement Disorders, Brahmsallee 21, D-20144 Hamburg, Germany.
Professor Dr Dirk Dressler is a new member of the Scientific Advisory Board of Deutsche Seniorenliga e.V., Bonn, Germany. Deutsche Seniorenliga is since 1993 a registered non-for-profit organisation supporting the fastest growing population group in Germany: the elderly and their relatives. ‘Most of our patients in neurology are elderly. For their immediate medical needs we have developed the concept of gerontoneurology. This patient group, however, requires special support beyond medicine to facilitate their social, economic, cultural and political participation. This is what we pursue with Deutsche Seniorenliga’, said Dressler.
The numerical proportion between older and younger citizens in Germany is rapidly changing. In 2050 half oft the German population will be older than 48 years and one third older than 60 years. The population younger than 20 years will then only represent 15% oft the population. Today, almost 30 million Germans are older than 50 years.
According to their statutes, Deutsche Seniorenliga supports nationally and internationally the ‘development and realisation of projects improving the individual needs and the individual quality of life of the elderly as well as their role in society as respected, equal and self determined citizens.’
Professor Lingjing Jin, the Vice President of Tongji University Medical School in Shanghai and one of China’s leading experts in botulinum toxin therapy visited Hannover Medical School Movement Disorders Section to intensify collaborative projects. ‘After Professor Jin had received its doctoral degree from Hannover Medical School he gained a reputation as one of China’s best botulinum toxin experts. Also, Tongji University is an excellent address for research and clinical work in the whole of China. That was the starting point for our collaboration 2 years ago’, said Professor Dirk Dressler, Head of Hannover Medical School Movement Disorder Section. ‘So far, we had an excellent start. We published several pivotal papers together and one of Professor Jin’s young doctors is now finishing her doctoral thesis with us’, so Dressler. During the visit which was supported by Deutsche Forschungs-gemeinschaft a close collaboration between both institutions was discussed. ‘The international research landscape is currently changing dramatically. We will be part of this change and we will take advantage of these new opportunities’ said Dressler.
Professor Dirk Dressler was appointed Chairman of the Scientific Advisory Board of ‘Dystonie-und-Du’ (DyD), the new German dystonia patient organisation. ‘I feel honoured to serve in this function using my experience in supporting patient organisations all over the world,’ said Dressler who works on Scientific Advisory Boards of dystonia patient organisations throughout Europe, the United States and South America. DyD is a new German patient organisation dedicated to all facets of dystonia. DyD was recently granted membership of Dystonia Europe, the umbrella organisation for European dystonia patient organisations. ‘There was a need to start a new patient organisation. Existing dystonia organisations have lost their momentum. It takes new people, a fresh start and unspoiled enthusiasm to serve dystonia patients in all their complexities. I am so lucky that high-profile experts from many medical specialties have agreed to join the team’, said Dressler.
PROFESSOR DRESSLER ON THE CURRENT STATUS OF BOTULINUM TOXIN THERAPY
Q: Professor Dressler, the botulinum toxin therapy has now been around for almost 30 years. Where do we stand today?
Dressler: The good news is: Botulinum toxin therapy is now a well-established therapy, especially for the many forms of dystonia. This means that we have standard procedures, guidelines, consensus statements, registrations, we have longterm experience and plenty of safety data.
Q: You paint a positive picture. Aren’t there any problems?
Dressler: Yes, there are problems, indeed. The biggest problem is the availability of the botulinum toxin therapy. Many patients would be perfect candidates, but they are not treated. In former days public awareness was the problem, now it is the restrictions of the health care systems. Depending on the particular system, obstacles are different and manifold: In some countries, like Germany, the drug is covered, but not its application, so less and less physicians and hospitals are offering this service. In other countries, such as the UK, there are regional NHS budgets restricting the purchase of the drug. In some places, for example in France, the number of licensed injectors is limited. Availability in non-industrialised countries is a completely different problem. Given the size of this problem, we are heavily engaged to bring this therapy to those countries where there is a dramatic need.
Q: Who can help? There are many patient organisations.
Dressler: For patient organisations it is very difficult to understand the problem: All of our hybrid health care systems are extremely complex and cause and effect are linked in a multifactorial pattern. And, even if the problem is identified: There is a fierce competition these days for resources and organisations with few patients are often pushed aside.
Q: What about the pharmaceutical industry?
Dressler: Botulinum toxin drugs are ‘old’ drugs. Traditional life cycle management suggests to slow down investments, especially in market development. So, sales figures are stagnant: A typical vicious cycle. Fierce competition erodes the price. One of the manufacturers has axed its research department altogether. For another one, take-over battles resulted in an exodus of experienced research and product staff. One new US manufacturer has an interesting new product idea. Registration studies are currently under way in the US and Europe. This is a good sign.
Q: What about Asian botulinum toxin manufacturers?
Dressler: So far, Asian manufacturers have been focused on aesthetic applications and on markets outside of Europe and of North America. However, I see that this focus is currently changing. There is growing interest in the therapeutic area and in Europe and North America. This will soon produce a new global competition and – hopefully – a revival of the industry’s enthusiasm. A huge potential is inside of China. Currently the Chinese botulinum toxin manufacturer is realising this potential and is investing in a therapeutic expansion within the country.
Q: What about basic research?
Dressler: Many grand old figures of basic botulinum toxin research have retired or are on the brink of retirement. Most of them will leave without replacement. Spending on botulinum toxin research in biodefense and in food safety has come down, as both threads are no longer top public priority.
Q: What about your specialty, clinical research?
Dressler: In the late 1980’s, 1990’s and even in the early 2000’s research got away with the search for the low-hanging fruits. Early on, we realised that these times would soon be over and we embarked on a planned and detailed research program focused on translational botulinum toxin research. This means that we identified basic aspects of botulinum toxin therapy and studied them with preclinical and clinical methods. This research included studies on product comparisons, stability, immunology and binding, on antibody-detection systems, dose-effect curves, injection site pain and studies on cost-effectiveness. Our studies with the strongest impact on patients were our recent studies on treatment algorithms. They clearly changed the way botulinum toxin therapy is now performed.
Q: What are those studies on treatment algorithms?
Dressler: Using new low antigenicity botulinum toxin drugs we introduced the high dose therapy, the short interval therapy and the re-start therapy.
Q: Why are these studies important for patients?
Dressler: With the option to use botulinum toxin in doses of up to Botox/Xeomin 1500MU, the high dose therapy, we can now treat more wide-spread dystonia and more severe dystonia. This has changed the dividing line between botulinum toxin therapy and deep brain stimulation. With the short interval therapy we can now help those patients in which botulinum toxin therapy lasts less than 12 weeks. This may increase the time of optimal treatment by up to one quarter or 3 months per year. The re-start therapy is for patients with antibody-induced therapy failure. When their botulinum toxin antibody titres drop during a treatment pause, botulinum toxin therapy can be re-started with a low-antigen botulinum toxin drug and sensitivity is re-gained and maintained without new antibody formation.
Q: Professor Dressler, what is your resume?
Dressler: There are clearly many challenges for botulinum toxin therapy. They include availability, the industrial environment, the situation in basic research and the stagnation in clinical research. But there is also hope: New competition and well-planned research can and will push botulinum toxin therapy to the next level.
Q: Many thanks, Professor Dressler
EDITORS:
www.cambridge.org/treatmentofdystonia
Interview with Professor Dressler
DE: Congratulations for your new book. What was the idea behind it?
DD: The book is based on the concept of our ‘International Congresses on Treatment of Dystonia’, a congress series well established over the last ten years. We want to focus on one disorder only. And for this disorder and want to combine all therapeutic approaches. Most of the time meetings are focussed on special methods and treatments. We believe, this will narrow down the therapeutic options. This is especially the case in a disorder like dystonia where there is no causal and definite treatment available. With this book we are strongly advocate multidisciplinary treatment strategies.
DE: What therapies are you covering?
DD: We focus on botulinum toxin therapy as the treatment of choice for most of the patients with dystonia. We also cover deep brain stimulation, conventional pharmacotherapy, rehabilitation, conventional surgical treatments and emerging therapies.
DE: Are you also dealing with the disorder itself?
DD: Yes, we update our readers on classification, pathophysiology, epidemiology, genetics, imaging, animal models and scales for documenting dystonia.
DE: What about special forms of dystonia?
DD: We have sections on musician’s dystonia, on pediatric dystonia, on psychogenic dystonia and on symptomatic dystonia.
DE: What is the target audience?
DD: We pulled the book together for ‘All who care for Patients with Dystonia’ including physicians and allied health care professionals. The medical areas covered include neurology, neurosurgery, neuropediatrics and neurorehabilitation.
DE: Do you think that also patients may benefit from this book?
DD: We know that there is a substantial proportion of dystonia patients interested in understanding their disorder and their treatments. Many of them are actually members of those patient organisations you are representing with Dystonia Europe. We put special emphasis on a plain and clear language patients will easily understand. Even relatives might want to get some background information, so that they can better support their patients.
DE: We wish this book good luck!
PROFESSOR DRESSLER KEYNOTE SPEAKER AT THE 3rd CONGRESS OF THE CHINESE BOTULINUM TOXIN ACADEMY
More than 600 delegates from all over the country met in the Western Chinese city of Lanzhou, Gansu Province to participate in the 3rd Congress of the Chinese Botulinum Toxin Academy. An additional 6000 followed the meeting over the internet. After previous congresses in Beijing and Shanghai, this meeting was a tremendous success covering all areas of botulinum toxin therapy including its aesthetic use. This meeting was a clear demonstration of the growing interest in botulinum toxin therapy in China. ‘I feel deeply honoured to support the development of Chinese botulinum toxin therapy. This is a unique opportunity to make botulinum toxin therapy globally available’ says Professor Dressler. He was keynote speaker at the previous congress and has established a close botulinum toxin research collaboration with Tongji University, Shanghai.
Press Review